The Patient Voice is Value Added in Integrating Relational Equity into Practice

Context: In response to a call initiated by CIHR in 2023, inviting patient, public, and community participation, the Patient Council of the Canadian Primary Care Research Network (CPCRN) responded with a Report on March 25, 2024. Strategic Patient-Oriented Research (SPOR) finds and supports synergy between people with lived experience, communities, partners, health care providers, researchers and policy makers.

Objective: The objective of the SPOR Refresh process is to define a renewed approach for/to delivering Canada’s SPOR that builds on successes to date while reflecting the evolving priorities of people with lived experience, community, partner, and health systems.

Study Design and Analysis: This evaluation was informed by the integration of community-based participatory research (CBPR) and transformative action research and grounded in the culture of this community which is built upon relational equity and their pre-established values which are: trust, kindness, respect and humility. The analysis was undertaken using inductive thematic analysis within participatory analysis.

Setting: The members of the CPCRN Pan-Canadian Patient Council engaged virtually while ensuring the values and relational equity were employed in each and every encounter.

Population Studied: CPCRN Patient Council.

Instrument: On-line survey created by CIHR for the SPOR Strategy Refresh.

Outcome Measures: The co-creation of the Report to the SPOR Strategy Refresh from the Patient Council of the CPCRN was submitted as a separate Appendix of the CPCRN.

Results: The Pan-Canadian Patient Council met electronically to co-analyze and interpret the themes. Some of the strengths identified were: involvement of dedicated people with lived experience (PWLE); built infrastructure that facilitated collaboration and knowledge exchange across Canada and around the world; and building relationships between all partners. Some of the opportunities for change identified were: the word “patient”, being an integral part of the all aspects of the research process; access to technology; timely compensation; and further integrating relational equity, relational accountability and servant leadership into practice.

Conclusions: For the outcomes of research to be embedded into practice or for them to transform practice, they need to be grounded in the culture of the community. In this way, the potential power imbalances within and external to the research are more appropriately addressed.